treatment

A break up is imminent

Posted on by mainelyhopeful

 

Dear c,

After a 9 month whirlwind of mammogram, ultrasounds, biopsies, surgeries, heart scan, bone scan, chemotherapy, radiation, uncertainty, fear and exhaustion I am cutting you loose after my last dose of radiation on Friday.   I am giving you more notice than you gave me, btw.  You’re welcome.

Obviously this relationship was doomed to fail from the beginning.  I never even respected you enough to call you by your favorite title.. “the Big C”. You’re nothing but a little c to me.

I’m over you.  I’m not taking your calls. Oh sure, our mutual friends at the Cancer Center will want to get together periodically and reminisce about our relationship.  I’ll humor them. It’s the least I can do after how hard they fought to get me away from you. Eventually they will grow bored and our visits will be fewer and further between until you will be nothing but a footnote in my book of life.

So long, c. It’s not me, it’s you.

My Bucket List

Posted on by mainelyhopeful

I have been working on a bucket list since long before my cancer diagnosis and, I imagine like all cancer patients, decided I had better get serious about the thing. What follows is a work in progress. The items that are crossed off were not realized, but simply thought better of since it is apparent I will, in fact, live.

Get a tattoo before I turn 50  (I still have 2 months, get off my back)

Last 2.7 seconds on a bull named Fu Man Chu (that’s a stupid song anyway)

Get a red mustang convertible.  (I didn’t really want one that badly until my husband bought himself a sporty little BMW this summer. Someone clearly lost sight of who has cancer in this family.  Yeah, yeah, he says I can drive it whenever I want but he always checks when he gets home to see if I did.  I caught him chalking the tires the other night)

Have more patience.  (a work in progress)

Get published (does this count?)

Get arrested See above.  I figure a good writer has to have something interesting to write about.  I hadn’t worked out the details of my arrest, but I know it would involve much hilarity (and liquor). I bet at least one of my cousins (Ann :)) would have taken one for the team and joined me.

Become a grandmother. (Kids?  I can’t do this myself)

Travel more.

Clearly the list needs work, but I’m in no hurry to finish it.   The only thing my bucket is going to be used for this next week is ice to chill the champagne. 

Just for fun

Posted on by mainelyhopeful

I’m going to start keeping track of the more insensitive comments around my cancer care.  I know that sounds petty, but like I give a shit.

This week’s winner… I was asked to let a man go ahead of me for treatment on Thursday. Poor guy needed a full bladder for radiation and he did not time things very well. Of course I had no problem with it.  A nurse who does patient education (and whom I have never seen before) was waiting for him and decided to sit down and chat with me. She asked how I was doing and commented on my hair growth. Then she said “as far as we ( btw.. who is we?  are you speaking in the royal sense or is there is a mouse in your pocket?) are concerned you can dye it anytime”.  I felt a horrified giggle bubble up in my throat.  I have been on auto pilot for a few weeks now and as long as I stay in neutral I can keep my shit together.  I managed a weak smile and offered that I hadn’t decided yet and may just keep it as is.  She got this frozen smile on her face and sputtered something about how I could probably get away with that, after all I had a young face.  She must have missed a few classes on sensitivity. Not that I expect (or want) to be treated with kid gloves, but between the doctor who treated me like an inanimate object on Monday and now this I’m starting to wonder if this is commonplace. I have been so lucky in my interactions up until now that I was kind of unprepared. Or maybe now that I’m nearing the end of my cancer treatments my head is a little clearer and there have been assholes all along  but I just didn’t notice.

I’m not nominating the next one for anything because I can’t think of one funny or sarcastic thing to say and this is supposed to be for fun.  It actually left me kind of stunned.  I saw my medical oncologist for the first time since finishing up with chemotherapy.  I had (wrongly) assumed that my doctors all shared information about my treatment especially something like a major change in my family medical history. I missed a full week of radiation when my sister passed away.  Yet, apparently there was no mention of it so I had to tell the nurse when she asked brightly how my summer was going.  Believe me when I say it doesn’t get easier with each telling.  She passed on the info to my doctor who expressed her sympathy as soon as she entered the exam room.  After asking a few questions she said she had a patient who just lost a daughter and that was probably worse. I just said yeah, it’s been pretty hard on my parents. What I wanted to say is.. of course it’s worse for a mother to lose a child, but it’s also pretty fucking horrible for a child to lose his mother and a sister to lose her only sibling.  Not to mention for a man to lose the woman he loved who he hadn’t had nearly enough time with, three little boys to lose a loving presence in their life, and for their mother to lose a trusted confidant. But I just sat there.  Because I didn’t want to make her feel bad.

Honestly, the hospital really wants to stop sending me those questionnaires. I may start filling them out.

Seriously?

Posted on by mainelyhopeful

“The best drama comes from otherwise normal human living and the best comedy comes from awful shit.”  Isn’t that brilliant? I wish I had said it. I was chatting with a friend about television series we both watch and like me, she is kind of drawn to the comedies about illness, addiction, criminal activity etc and she made that comment.  Like me, again, she has recently suffered the unexpected loss of a loved one and had to deal with all that followed.  Today my mother and I went to see about a grave marker.  The lady that waited on us knows us all and was visibly upset about my sister.  We saw one we both liked almost immediately but we did not want to order anything until her significant other could give his opinion. We were just doing the preliminary footwork.  We were standing around chatting and the woman asked how I was doing. I assumed she was referring to my cancer so I said “almost done treatment”.  She looked shocked and I couldn’t help but say “seriously? you didn’t think this hair was a fashion statement did you?”. She laughed and then told me about another woman she knows undergoing treatment whose hair came in gray and curly and how lovely it was. Then she launched into some pretty horrifying stories about people she knows with cancer that now have mets to the brain.  Now my mother has just buried one daughter and the other has cancer. She looked shell shocked.  This conversation went on for what seemed like forever until she paused in her litany of horror to mention how one of them got shingles in the midst of everything else and I pounced on that. I told my mother I needed to look into whether I was at greater risk for shingles having had radiation and after successfully changing the subject we made a hasty retreat.  I had a phone conversation that went pretty much the same way over the weekend.  Someone knew someone with the same diagnosis as myself and they died.  I offered their stage may have been higher, their treatment not as aggressive, etc. and was told “If you can think that way, that’s good!”   Thankfully, as my television preferences will attest, I have a pretty twisted sense of humor and I am able to laugh comments like that off and even make plenty of distasteful comments of my own (about my own situation, I would cut out my tongue before I would joke about anyone else’s cancer), but you gotta wonder what the thought process is when people let words just fall out of their open mouths with no supervision whatsoever. I mean, seriously?

Prior to that fun little field trip I had my radiation treatment.  Today they had to take measurements and make plans for the final 8 treatments that will be just to the tumor bed itself.  The two techs explained everything they were doing and said the doctor would be in to make his recommendations.  My doctor was off today so it would be the “other guy”. I was drawn on and measured and repositioned and was lying on the table when the doctor came in. He said not one word to me. Never made eye contact or acknowledged me in any way at all.  He peered at me and made a few comments to the techs and walked out. I felt like a disembodied boob.  It was seriously the most uncomfortable feeling I have had since this entire thing started.  Seriously.

Happy Together

Posted on by mainelyhopeful

Last night we were at a waterfront concert seeing the Happy Together Tour with the Buckinghams, Grass Roots, Gary Puckett,  Mickey Dolenz of the Monkees and Flo and Eddie of the Turtles.  Aside from my daughter I was probably the youngest person there!  When the performers would ask “What were  you doing when this song was a hit (in 1968, 1969! ?)” while most in the audience were in the  service or high school/college I was in the first grade.  I thought it was pretty funny that even with my (new!) gray hair I was one of the babies in the crowd.   We almost missed the show.  Youngest daughter (Thing 3) was in charge of the tickets. She was the one that first heard of it and talked her father out of his credit card to buy them. They were electronically sent to her email account.  All summer we were all thinking the concert was Sat, the 28th.  She thought it was at 5:30, I thought 7:30.  I asked several times this week for her to check. She finally did. Last night at 6:40.  We live an hour from the venue. Her father was out mowing the lawn and was very hot and sweaty. I had been doing housework. In 10 minutes we had both showered and changed while she printed off the tickets and away we went.  I said we would miss most of the show, not be able to park, etc. etc., but we wanted to see at least some of it for the 150.00 we spent on tickets.  We got there at 7:50 and had only missed some of the first group (The Buckinghams) and miracle of miracles there was a (free!) parking space right at the gate!!  We had front row seats.  The bands were awesome. Was Gary Puckett always so dramatic?  At the end they all performed together.  It was a great night out. My daughter snagged a guitar pick from the Grass Roots guitarist and she and my husband both got Mickey Dolenz autographs.   Since we missed dinner, on the way home we stopped off for a plate of eggs and finally got to bed well after midnight.

Since I’m having radiation daily, not to mention the emotional upheaval of the last few weeks, I’ve been very tired. I planned on a quiet, restful Saturday so I would be fresh for the concert and a nice dinner out.  In order for that to happen I didn’t stop all day Friday. I cleaned the house from top to bottom, did all the laundry (including hanging it out), the daily one hour round trip for treatment, did  groceries, and spent several hours at my desk.  Just as I was about to take a hot bath and relax, we were flying down the highway to a concert.  I’m glad I ignored my knee jerk reaction to stay home and just let the two of them go.  All my life I’ve been a planner (and bit of control freak) and I’m sure I’ve missed out on a lot of fun because I hadn’t planned it ahead. I’m the least spontaneous person I know.   Maybe cancer has given me a gift. After all, I didn’t plan on having cancer or spending the better part of a year fighting it, but there it is. It hasn’t stopped me from living my life. I’ve just made room for it (for now).  I didn’t plan on losing my sister in such an unexpected and heartbreaking way, but that happened too and we are dealing with it and going on because we have no choice.  One thing she always did was make time for fun and family, even if it meant letting things go that she was just too tired to do like housework or staying on top of other responsibilities. It drove me crazy at times but I’m so glad now that she knew what was important. Certainly not planning out every minute of your day/week.

Thank you, Debbie, for that. And…well.. Fuck you, Cancer.  (no one really thought I would thank cancer, did  you?)

The Big C

Posted on by mainelyhopeful

Just finished season 2 last night. Anyone else watch?  I love the show, but it’s not terribly realistic.  For that matter neither is Breaking Bad, which is next on my list. Without giving away too many spoilers.. has anyone undergoing cancer treatment ended up socializing with their oncologist? Been told the only way to know if the chemo was working was by the severity of side effects?  Been asked to speak to a roomful of residents and told them all off? Attended their own funeral?  Run a 26 mile marathon after only 2 days of training while your blood counts are in the toilet?  Started manufacturing meth?  I feel like such a slacker and I’ve only got a little c.  I need to reexamine my life and do something really big. Or not.

On my own cancer front, I’m about halfway through radiation with only some slight pinking (pinkening?)  of the skin on my side.  I was told to put aloe on the “area of radiation”. I was not, however, told how large this area would be. That would have been good information to have from the beginning.  The area I have been treating all along is fine.  All in all, that’s my only complaint and it’s a minor one.  I missed a week of treatments and then the tech who I had been seeing daily was on vacation for a week. When she came to take me back on Monday she walked right past me and then returned a few moments  later for me. It took me a few minutes to realize she hadn’t seen me without a wig or wrap.  I’ve retired them for good.  And my eyebrows! They literally came in overnight. That was kind of weird. I have eyelashes again too. Little stubby ones, but nice and thick and full.  A return to normal, or at least a new normal.

Relieved and frustrated

Posted on by mainelyhopeful

I got my results from the BRCA 1 and BRCA 2 gene mutation testing today and I am negative! What a relief to know that I haven ‘t passed this on to my daughters. They will have to be watchful and start getting mammograms earlier than most women, but we can do that.  Actually the rule of thumb is 10 years younger than the earliest breast cancer diagnosis and I am 49. That’s about the age they would start anyway.

While I am extremely relieved and grateful I am also frustrated and a little pissed off. I was told at my meeting that results would be available in 3 weeks (I was tested on June 18) and then I was given an appointment to get the results on 7/30 (6 weeks later!). I was told I should postpone radiation until I got the results. I refused to do that.  In 3 weeks I would have been nearly half way done, in 6 weeks when I was scheduled to be given the results I would be nearing the end.  Once I had my radiation schedule I called to cancel my appointment as it conflicted. I asked for my results to be given by phone and was promptly transferred to the counselor’s phone, where I was cut off when attempting to leave a message. So I emailed her at the address on her business card. It came back as undeliverable (turns out the lower case l is really a 1).  Finally I wrote a letter requesting the results by phone or mail. I told them I was not willing to wait 6 weeks and I could not keep that appointment even if I were. This was Wednesday. They either got it late yesterday or first thing this morning (Friday) and called. And they had the results available.  They were going to sit on them for 6 weeks had I not sent that letter. Actually, longer had I rescheduled for after I was done with radiation. There was no apology for that, just a feeling they were doing me a huge favor by giving them to me over the phone.  I expressed my relief that they were negative and had the feeling (again) they were hoping for a positive based on the response.  I was (again) given a list of family members that should be tested for Lynch Syndrome. I have passed the information and recommendations along.  Given my experience I am hardly going to be the poster child for genetic testing.  At least at that facility. Unfortunately it is one of only two in our state.

I am even more grateful for my doctors and the cancer center having dealt with this other facility.  This was truly the first negative experience I have had since the diagnosis. Well, other than the whole cancer thing.

My first day at Camp Chernobyl

Posted on by mainelyhopeful

Today was my first of 33 radiation treatments. I arrived early so I could visit the gift shop and buy some clear Aloe and Tom’s aluminum free deodorant and then proceeded to the changing room.  I am supposed to strip from the waist up, put on a johnny tied in the back and a robe and then sit out in the (very well air conditioned) waiting room.  The first johnny I took out was HUGE.  As was the 2nd, 3rd and 4th.  By now the laundry basket was full and the pile was dwindling so I gamely put on the 5th one I pulled out.  I wrapped it around myself 3 times and had to pull the strings through the arm holes and tie it in the front.  Anyone that needs something that big will likely not fit into the CT scan, so I’m not sure why they have them, let alone so many.   I assumed the majority of the people in that waiting room would be similarly dressed, but nope.  I was the only one.  Everyone else probably got a memo telling them to wait for the next load of clean laundry.  They were all in street clothes. Then I remembered there is another waiting room for those of us in various states of undress.  Anyway I sat there dressed like a burrito until it was time to go back. The treatment went well with only a mild glitch when they told me to take my arms out of the gown.  It was easier said than done. They drew on me again. I am going to bring coloring books for those girls so they will leave me alone.  I thought the tattoos were quite enough, thank you.  After the treatment you get the sense they are in a hurry to get you out and the next person in. Mainly because they whip your form off the table as soon as your head clears it and start setting up for the next guy. So I re-wrapped as well as I could for my trip back through the waiting room to the dressing room. When I stepped out I was turned around. There was a flimsy dressing partition where there should be a door. The tech saw my confusion and said “Oh sorry, just step around it, that’s our door”.  Anyone over 5’4″ walking by would have a clear view of me being radiated. FML.

I leave you with this cute little burrito. Did you know it is impossible to find a stock photo of an adult burrito?  Weird.

Image

Good News, Bad News

Posted on by mainelyhopeful

The good news? Self inflicted carpal tunnel is not a reason to stop chemo early.  The bad news?  I have no excuse to stop chemo early. Ha!  Actually I told my oncologist that I wanted to continue after coming this far and she agreed.  My numbers were looking good and my hemoglobin is on the rise and I’m already feeling it. I have no idea how low it got because each week I’m told my numbers look good. I assumed that meant I was some kind of hemotologic savant, but apparently all it means is they haven’t bottomed out yet so lets see how sick we can make this chick before she cries uncle.  I will assume my all time low was week six. That was the first time I really felt the full effects of all of this. Week seven (last week) was much better with only one bad day physically and one day when I was doing an internal one woman rendition of Camille Image.all day. It was all very dramatic and silly.   Sunday and Monday were really good days. I visited with family, got a lot accomplished at home, did errands and bought some beautiful plants to start working outside as soon as I can.  Next weekend we have two daughters graduating ..college and grad school!, Mother’s Day to celebrate and lots of family time. I’m determined this will be a good week and I will have plenty of energy to enjoy the weekend (by that I mean I plan to spend the next few days doing as little as possible so I can fully enjoy the festivities on the weekend).

Only 4 more treatments left. I had my favorite oncology nurse in the lab today.  She took my port virginity so we have a special bond. Actually they are all pretty great. Except for that one redhead whom I have never seen again. She must have been filling in or was fired after stabbing me in the chest accidentally sticking the needle in some part of my anatomy other than the large bullseye with all the scarring from previous needle sticks. Honestly, I can see how that could happen. If you were blind.  After she offered to try again and I said “oh hell no! Sorry, you need to get someone else, you only get one shot to kill me“. She brought in a supervisor who slipped the needle in effortlessly. Before she did she asked if the skin was still numb from the spray they use. I said “Not as numb as that one”. We all laughed uncomfortably and I made a mental note that it’s probably not a good idea to insult people whose job it is to stick large needles in your chest.  I’m usually pretty good about keeping my internal running monologue to myself but sometimes my filter slips. And sometimes I only pretend it slips.  That chemo brain has to come in handy for something.

Off to watch the voice and root for my girl, Juliette!  Image

 

My latest cancessories

Posted on by mainelyhopeful

 

So apparently the numbness I am experiencing is concerning, even though it’s not the neuropathy we are warned about with Taxol and it’s cousins where the fingertips and bottom of the feet are numb.   My oncologist said it was carpal tunnel but it is getting worse almost daily. I wake up to two completely numb hands and have to shake and flex them to get the blood circulating. I hadn’t put two and two together until she asked about my feet but I have noticed one or both will “fall asleep” when I’m watching television in the evening.  I have had carpal tunnel in the past when I typed for 8-10 hours a day and it was painful. This is not.   I was told I may not be able to complete the 12 rounds. I will wear these splints at night to prevent my nerves from compressing in the wrist causing numbness. If I still have it, then it’s the Taxol.  Since I’ve had the complaint from week one and it’s been progressively getting worse she wants to stop so I don’t have permanent damage. I don’t want to stop. I have cancer. I was told I needed 16 rounds of chemo and I want 16 rounds.  I know that sounds ridiculous, but I don’t want to be sitting in her office in 3 years and hear it’s back and we should have done more the first time.  On the other hand I was told from the beginning I was likely getting too much chemo, but since there is no way to predict if the cancer will come back, mine is hormone receptive and I am relatively young and there was micro-metastasis in the sentinel node, we would throw everything at it.

She brought up my genetics appointment again too.  It was moved back to June when I will be between chemo and radiation. I have mixed feelings about it.  I need to do it, especially for my daughters, but I don’t want to open that can of worms just yet. I’m tired of thinking about cancer. I don’t want to be told I should have had a mastectomy after all and I did all this for nothing.  I don’t want my 22 and 26 year old daughters to have to make decisions about their breasts and ovaries before they’ve had a family.

Otherwise, the appointment went well except for the unleashing of my paranoid obsessive disorder